From relentless mockery to the safety and mobility of a wheelchair

January 17, 2017

Chennai-based Aarthi Sampath was diagnosed with Limb Girdle Muscular Dystrophy, a progressive wasting of the muscles which defies cure. No one in her family understood its implications. This is a touching story of her trials and tribulations and her triumphs as well.

I was diagnosed with muscular dystrophy, a hereditary condition marked by progressive weakening and wasting of the muscles, in 1992 when I was only 11.

THE DIAGNOSIS

When my brother had his arm fractured, friends visiting my brother thought my gait was not proper and they suggested I get help soon. Till that time my parents thought it was probably a kid’s style of walking. But after this friend insisted, my dad took me to an ortho surgeon and after a few medical tests, he referred me to a neuro doctor. I was again made to go through a series of tests after which I was diagnosed with limb girdle muscular dystrophy.

I did not take the issue seriously as I was not aware about the impact of the disease. Slowly, I started experiencing problems one after the other like difficulty in sitting, walking, climbing stairs etc. To our utter shock, my family and I were told there is no treatment yet and I was advised to take physio therapy, which helps make the condition more stable and also helps maintain muscle strength to the extent possible.

BEING A LAUGHING STOCK

I faced relentless teasing and mockery from peers at school as well as from neighbours, especially when I would walk, run or while playing games. My gait was awkward and my movements were disjointed. At the time, my parents did not have the slightest indication of the seriousness of my condition.

Before the problem was diagnosed, I was always afraid to attend physical training classes. One particular incident still recurs to me as a nightmare. I was asked to do long jump in my physical training class and I really made myself a laughing stock as everyone was watching as to how I ran and jumped. I could not even sit cross legged and this was such an issue of mockery among my own classmates.

TREATMENT

After being diagnosed, a physiotherapist who visited me, even told me that I will not live long. But I proved her wrong as I’m still very much alive. During the ten years since the diagnosis, I have had quite a few therapists. But it is Kavitha who gave me a lot of positive energy as a therapist and would make me work towards strengthening my muscles. She is an energetic and creative person and is still a beacon of strength for me.

I have even tried alternative medical treatment in the form of homeopathy. But it did not help much.

UNSTINTED SUPPORT FROM FAMILY

Despite being heartbroken by my diagnosis, my parents supported me whole-heartedly and ensured that all my needs were taken care of. I began falling frequently and had quite a bit of difficulty in climbing stairs or getting up from a seated position.

Despite the terrible struggle, my mother never gave up on me. She decided to help me live an active and productive life, trained me how to cook and even enrolled me in a beautician's course, as well as painting classes.

As I learned more and more about painting and started experimenting with various mediums, I began exploring my creative talents through art and handicraft and I felt happy and involved. However, my condition continued to get worse as I had more and more trouble walking and I couldn't even lift my arms normally.

My condition continued to deteriorate as I would fall frequently, especially in the restroom and had to helplessly wait for help to arrive, because I couldn't get up from the floor myself.

Slowly, I stopped taking classes and stopped going outdoors. Although I painted at home, I did my best to avoid the outside world completely. Hoping to provide me with the a window to the world, my parents thoughtfully bought me a laptop.

Besides my parents, my grandfather also proved to be a huge inspiration in my life. He taught me to use the laptop and encouraged me to watch English movies, listen to music and entertain myself, so that I would never be bored. He would spend a lot of quality time with me, and we would watch movies or other programmes together. Since my parents were working at the time, he would keep a close watch over me to ensure that he was around, lest I fell.

The period between 2002 to 2011 was very difficult for me and forced me to endure a great deal of suffering, but my grandfather and parents helped me through the darkest days. Finally, in 2011, a miracle came in the form of a wheelchair, that my family finally convinced me to use.

FREEDOM THROUGH THE WHEELCHAIR

In October 2011, I began moving around and living my life with enthusiasm, because the wheelchair allowed me the safety and mobility I needed. Once more, I began enjoying life and pursuing my creative interests like painting, craft work, watching movies and so on.

One of my neighbours came into my life like a breath of fresh air at this time and ignited me with positive energy. She was around only for six months, but those were the best days of my life, for she changed my outlook completely and showed me how to be happy. She was instrumental in encouraging us to purchase a dog, my best friend, Shadow. After she relocated, I missed her desperately, but Shadow was able to ease the pain, with his constant presence and unconditional love.

OTHER ASSOCIATIONS

My latest inspiration came in the form of Preethi Srinivasan, a quadriplegic, who is the founder of Soulfree (www.soulfree.org), a public charitable trust that is working to provide hope and improve the quality of life of persons with severe disabilities. My mother had seen a TV programme about her life's story and shared the details with me. Ever since then, I began quietly following her tweets, but never found the courage to reach out to her directly. It was only in December 2016 that I finally overcame my fear and e-mailed her, to congratulate her for her activities.

Preethi was so open and friendly, she encouraged me and immediately introduced me to many others living with varying degrees of challenges. All this while, I had isolated myself from the world, and also from other persons with disabilities, but now I have the opportunity to share my struggles and challenges with others who really understand what I'm going through.

I feel like it's a new beginning for me, and that I am on a journey of Hope and discovery. The New Year holds out promises for newer associations. My physical condition may not have any cure, but the unconditional love and support of the family and acceptance of true friends can go a long way towards curing depression and discontentment. And I am blessed that I overcame my fears and learned this truth in my life.